Well our life outside the hospital didn’t last long.  We’ve been back twice since our first discharge and it doesn’t look like we’re getting out anytime soon.

We noticed a few things since we left the hospital that were worrying me but by Tuesday afternoon there was no denying that he was uncomfortable.   He was fussy and cranky and sleepy and not eating much.  We had had a few days where he was doing so well, he seemed so content and happy, but now we knew something was off and we were right.

It turns out the shunt was over draining the fluid.  The ventricles had become to small and the brain was collapsing.  When this happens fluid starts building on the outside of the brain which was causing excess pressure again, just in a different location.

Because Kai had an adjustable shunt put in they were able to change the pressure flow quickly and painlessly using a magnet.  After a few days of observation he was doing better and we were sent home.

Unfortunately we weren’t home long.  The very next day I felt like something was still not right.  The docs told us that the adjustment could take a few days to regulate to I was trying to give it some time, but Kai started running a temp and I was worried something else could be going on.  By That nights he was pretty restless and would not eat.  By Saturday he was also vomiting and we decided it would be best to have him looked at.

They did all kinds of test to rule out infection and virus. A new ultrasound and CT scan were done to check the shunt and everything is checking out fairly normal.  His temp has gone down after being re-hydrated with IV fluids, but he will NOT eat a thing!  It is so hard to sit here trying hour after hour to get him to take something, anything with no luck at all. We went from having a baby who could not eat enough to a baby we were having to force food on.  I felt like feeding him was the last thing I had to keep him happy and healthy and now I was loosing that too…

Today one of the docs said to me “I know you have an appointment in Boston on Friday, we are hoping to have you out of here by then.”  Today is MONDAY…..